Beruflich Dokumente
Kultur Dokumente
Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007
ABSTRACT
Much debate concerning precedent autonomy that is, the authority of former, competent
selves to govern the welfare of later, non-competent selves has assumed a radical
discontinuity between selves, and has overlooked the bridging role of intimate proxy decisionmakers. I consider a recent proposal by Lynn et al. (1999) that presents a provocative
alternative, foregrounding an imagined dialogue between the formerly competent patient and
her/his trusted others. I consider what standards must be met for such dialogues to have moral
force, appealing to narrative and feminist ethics. I then critique the dualistic construction of
selves implicit in much of the advance directive literature, noting the continuities of
dependence, character, and body, as well as the social dimension of the construction of selves.
Keywords: autonomy, hyperseparation, imagination, narrative ethics
I. INTRODUCTION
Critics of the advance directive movement have highlighted both the
metaphysical and the epistemic constraints on projecting decisions to future
states of ourselves. Metaphysical skepticism focuses on the problem of personal
identity through radical physical, mental or emotional changes, and thus
questions the moral priority given to care decisions made by a prior state of
the self. Epistemic skepticism casts doubt on our capacity to imagine ourselves with different abilities, needs and preferences in radically different circumstances. Proxy decision-making hardly alleviates these difficulties, as the
Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007
436
substituted judgment standard duplicates the epistemic problem while the best
interests standard seems to dismiss the preferences of the formerly competent
person.
Recently the debate concerning precedent autonomy the authority of
former selves to govern the welfare of later selves has reached new heights in
a disagreement between Dena S. Davis and Rebecca Dresser (Davis, 1999).
Whereas Dresser calls us to foreground the interests of current persons over
the autonomy of their former selves, Davis recommends (in the extreme case)
rational suicide for those with a diagnosis of dementia who prefer death with
dignity to becoming a pleasantly senile future self. She says,
If Dressers perspective becomes the regnant model, persons at genetic risk
for diseases such as HD and AD, and for whom autonomy and independence
are important values, would do well to consider preemptive suicide.. . . For
the autonomy-oriented person who accepts Dressers arguments, a diagnosis
of impending dementia is a warning that one is about to be invaded by an
enemy army that will always win. It is entirely sensible to burn down the fort
and refuse to be at home. (Davis, 1999, p. 321)
In this paper, I challenge Davis assumption that the discontinuity between
past and future selves in dementia is such that current selves must, in
desperation, view their future selves as hostile and embrace suicide as the best
way to assert their moral agency. Appealing to a proposal made by Lynn et al.
(1999) (hereafter, the Lynn/Dresser proposal), I explore the suggestion that an
imaginary dialogue with a former self, constructed by intimate others in the
present, can be a vehicle for the former selfs agency even when the current self
is no longer competent. I will argue that, with appropriate constraints in place,
following their proposal for an imaginary dialogue between formerly competent
patients and their intimate others will, in some cases, de-problematize proxy
decision-making and strengthen the moral authority of privileging the interests
of non-competent persons over the prior directives of their competent selves. I
will then consider Daviss objections to such privileging, and expand on the
Lynn/Dresser notion of a social self to challenge assumptions about the nature
and boundaries of selves inherent in Davis account.
Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007
437
one, and, as such, reflects the central importance given to the value of
autonomy in the health care ethics of the late twentieth century. The moral
weight of patient/client autonomy derives partly from historical and
sociological factors, and partly from an understanding of the moral status of
the human person. Historical and sociological explanations for foregrounding autonomy include the public exposure of widespread past abuses to
participants in medical research and the challenge to physician paternalism
from an educated public with increased access to medical information. The
ethical argument for foregrounding autonomy derives from the recognition
that persons are rational and reflective beings who choose values and wish to
live their lives in accordance with those values. To deny persons a privileged
voice in their health care decisions is to deny their status as moral decisionmakers and to deny the importance of the body as a vehicle of personal
identity and moral agency. The prerogative of patients/clients to make
decisions about their own treatment is widely acknowledged and is embedded
in Anglo-American law and in the codes of ethics of Western health care
practitioners. Competent patients/clients are understood to have a privileged
status in health care decisions and to have the right to refuse advice or
treatment, even if doing so threatens their lives.
When persons suffer from conditions, which limit their decision-making
capacities, their privilege as autonomous decision-makers is suspended. Yet it
is precisely in anticipating such circumstances that many people vehemently
desire that their wishes concerning future treatment will be followed. There is
a widespread fear of becoming a passive victim of a highly technologized
death, of an extended life of loneliness, suffering, and indignity, or of being a
burden to family members. It is clearly desirable for persons to be able to have
some say in the conditions of their extremity, for the end of life should reflect
the moral significance of individual personal existence and the values that
have shaped it. Advance health care directives, filled out by currently competent persons and spelling out their preferences for future treatment in the
event that they should become non-competent, are a popular vehicle for
addressing this desire to extend autonomy.
When persons are not competent to make health care decisions for themselves, proxy decision-makers, usually close family members, make decisions
for them. If an advance directive has been written, proxies are guided by the
wishes expressed within them. Where no directive exists, but the proxy has
some knowledge of the wishes of the patient in question, the substitute decision
standard is used. Here the proxy infers from personal knowledge of the patient
what s/he would prefer, and decides accordingly, setting aside her/his own view
Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007
438
Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007
439
formed. This process belongs not to the self-sufficient self, but to a model of
persons as social selves, responsive to and influenced by the responses of
others. (Lynn et al., 1999, p. 276)
To illustrate this approach in action, the authors have us consider the case of a
wife who has filled out a directive refusing antibiotics if she should develop
pneumonia. Late in the course of her dementia she does, in fact, develop
pneumonia, and her husband nonetheless insists that she be treated with
antibiotics. Why should care-providers respect his current wishes over her
past directive? Because, the authors argue, the directive does not reflect the
process which would take place, were she competent and were she and her
husband able to discuss the fact that the treatment is relatively painless, her
pneumonia reversible, her current state of dementia not as burdensome as she
had feared, and his attachment to her such that letting her go now would be
very hard. This is not simply the displacement of her wishes by his. Rather, it
is the recognition that (1) her past preferences could not be viewed as
expressive of her values in this circumstance, since, as they have argued,
preferences are responsive to changes in situation and are determined
dialogically; and that (2) the husband brings to the decision his knowledge of
how she tends to decide matters and the constellation of values and
experiences out of which her decisions proceed. He can make up her deficit
of awareness and engagement with the current circumstance because he, as
they so movingly put it, now has her self in his keeping, for his relationship
with her has been constitutive of them both (Lynn et al., 1999, p. 277).
The Lynn/Dresser proposal has much to commend it. It takes seriously the
metaphysical and epistemic difficulties of advance care planning, yet proposes
a remedy that both respects the agency of past selves and the interests of
present ones. For arguably the past competent self is present in the negotiation,
embodied in the process and substance brought forward by family members,
while the circumstances and interests of the current self also play a role, as
assessed and evaluated by proxy.
The proposal also has merit in that it reflects recent theoretical discussions
of personhood and moral decision-making that have proposed a similar,
though more modest, role for intimate others. For instance, Diana Myers has
analyzed autonomy as a dynamic set of interactive competencies of selfdiscovery, self-definition and self-direction (Meyers, 1989). Susan Sherwin
(1992) and Sarah Hoagland (1988) have proposed models of autonomy
(amicalism and autokoenony respectively) that show our reliance on
Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007
440
Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007
441
available to the proxy due to a previously morally uneventful life on the part of
the loved one; or there may be faulty judgment stemming from a systemic
downgrading of interests of some family member. Thus, data for these
imaginary dialogues may be missing, incomplete, suppressed, or biased, and
their authenticity and moral authority may thus be questionable. Determining
the authenticity of simulated dialogues requires more rigorous guidelines.
Let us address these challenges one at a time. First, in the unlikely
circumstance where nothing in a patients former life is sufficiently ethically
analogous to the current situation to provide data for the imaginary dialogue
about how she would reason and what she would want, there is no alternative but
to revert to the best interests standard. In these circumstances, any version of
substituted judgment imaginary or not would likewise be uninformed.
Equally obvious, the imaginary dialogue is most morally convincing when
closest in time and content to real dialogues between the patient and the proxy.
Thus, in the case of slowly advancing dementia, the patient has probably
undergone similar experiences and participated fully in decision-making while
competent. Preferences about similar circumstances in the recent past will have
been informed by experience and conversation and can be confidently asserted
in the present.
Dealing with emotional obstacles to providing a faithful reconstruction of
the preferences of a loved one, such as denial, shame, or fear of loss, likewise
need not negate the usefulness of the model. Such states are often identifiable
by care-providers, and can usually be dispelled by sensitive discussion. Anne
Donchin sees the cultivation of increased perceptual skills on the part of careproviders as one of the requirements for taking relational autonomy seriously.
She says professional care-givers can develop greater acuity in picking up
situational cues that extend their knowledge of patient needs and that by
cultivating such skills, providers would expand opportunities to strengthen
patients sense of their own agency, encouraging them to relate to surrounding others in ways that support their own aims and ends (Donchin, 2001,
p. 377).
The interesting cases, those that test the novelty and value of the Lynn/
Dresser proposal, are those where emotional obstacles are not a factor, but
interpretation is required to construct a plausible dialogue. In such cases, we
do have data about a loved ones past preferences, reasoning styles, and value
commitments, but inferences are required to arrive at a conclusion about what
they would want now. For, as noted above, we are never fully transparent, even
to intimate others.
Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007
442
Here narrative ethics might seem a promising approach. Can the norms of
narrative ethics provide us with guidelines for authentic simulations of moral
decisions? According to Howard Brody (1994), narratives support ethical
decisions by telling a coherent story, with consistent and plausible characters
whose values, relationships and commitments, descriptively bound together,
point prescriptively in a particular direction. Further, claims Brody, narrative
ethics gives pride of place in the genesis of autonomous decisions to
interactions with intimate others, precisely as the Lynn/Dresser proposal
supposes. Brody says,
How would I approach a momentous decision in my own life? First, I am
conscious at some level of wanting my life to unfold in a coherent narrative.
I want my actions to appear reasonable and responsible, as the sorts of
things that the principal character in my life story would do, given what we
know of his past history, his value commitments, and his relationships with
others . . . Moreover, I want my life story to be the story of a person who
cares what his close associates think of him . . . . How will I know what
decision seems best to fit with the history and the character of the principal
figure in my life story . . . ? I may have to try on different choices, both to
see how my family and friends react to them, and also to see how well I can
envision myself following out that course of action. (Brody, 1994, p. 210)
As well as reinforcing the role of intimate others in the making of ethical
decisions (and so, by extension, supporting the Lynn/Dresser proposal),
Brodys account suggests norms of adequacy for our imaginary dialogues. We
might assess proxy judgments about mediated preferences on the basis of
whether they tell coherent stories of the moral lives of loved ones.
Unfortunately, though protecting our imaginary dialogues from pure
arbitrariness, narrative norms alone are insufficient to guarantee authenticity,
for, as we all know, lives (and any other set of events to be patterned) are over
determined. A number of competing narratives can tell an equally plausible
tale. Let me illustrate this point with a personal example.1
A few years ago my father suffered a serious infection in his leg. It began
when a small stone rubbed against his foot on his customary daily nine-mile
walk. At that time, my father was in his mid-seventies, very vigorous and fit,
and taking pride (as he always has) in his physical strength and stamina (which
are considerable). As a man who has always been active and dedicated to the
service of others, he dreads morbidity, although not death. As I drove to the
hospital where my father was barely conscious and the infection was
Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007
443
Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007
444
Let me get personal again here for a moment. My mother, who is ninety-two,
has periods of dementia increasing in scope and duration. She sometimes
doesnt know her daughters or sons-in-law, grandchildren, or friends. She
doesnt know which country she is in or what has taken place in the recent past.
She always knows my father, but sometimes thinks he is her father.
As a young woman, she spent many years nursing her ailing mother, as a
result of which she told us all her life that if she ever became significantly
dependent we should put her in a home. Until last winter, my father looked
after her, managing everything from personal care to cooking to safety to
companionship. However, when he had a health crisis and could not manage
her care, we found her a place in an extended care facility, where she stayed
for four months. Every day of those four months she asked why she was there,
where was her home and family. Every day my father explained it all and tried
to comfort her. Finally, in better health and unable to face the separation any
longer, he brought her home to care for her himself again, for as long as he
can. What do we make of her former enduring preference (indeed, insistence)
that she be placed in a home? To follow that preference now for that reason
would be unthinkable. But in order to support my intuition that her current
interests must trump, must we abandon respect for her former values, style of
reasoning, and oft-stated preference?
One strategy for reconciling the preferences of formerly competent loved
ones with their less- or non-competent successors without abandoning the
Lynn/Dresser proposal is suggested by Brodys account of narrative ethics. In
describing the genesis of narratives, Brody maintains that shared cultural
ethical norms norms such as rights, responsibilities, and virtues are
necessarily elements in the backdrop of our stories (Brody, 1994, p. 213). It is
inevitable, he thinks, when telling a story of personal morality, to engage with
cultural norms, whether implicitly or explicitly. We might, therefore, include
in our imaginary dialogue a critical component that challenges supposed
preferences against ethical norms. We might even refine these norms (for
instance, by subjecting them to feminist analysis), thereby correcting for
unconscious bias.
Were we to employ this internalist solution, we might be able to reconcile
our moral intuitions about the appropriate care of non-competent patients with
respect for the agency of their former, competent selves, albeit hypothetically
and with considerable moral and imaginative license. We might then be able to
say, for instance on behalf of my mother, that her preference would be for the
care of her current self, notwithstanding her former distaste for dependency,
Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007
445
since she would certainly have accepted the moral challenge to examine that
preference in light of our responsibilities and our compassion and indeed
would have responded with compassion for her current self! She ultimately
would have approved of our actions.
But this might seem to some, and no doubt would to Dena Davis, an
unacceptable sleight of hand. Isnt it, after all, acknowledging victory to the
pleasantly senile self, she who is radically discontinuous and in competition
with the self whose moral preferences were clear and whose future so dreadful
that Davis counseled suicide? In this final section, I would like to gently
challenge Davis analysis, in the hope of reducing the discontinuity she
assumes between the selves of her conflict and, hence, of giving some
ontological grounding to the moral prescriptions I sketched above.
Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007
446
Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007
447
between the now self and the then self (Koppelman, 2002, p. 81). And she
goes further to suggest that, since it is the episodic experiences of the self
that help to shape the values of the self, proxy decision-makers should develop
the skill to put the self back together, not necessarily as it was before.
Surrogate decision-makers require a better understanding, she says, of
how changes in brute desires, emotional reactions, and circumstances affect
changes in character, life plans, and goals (Koppelman, 2002, p. 82). Where
circumstances or responses of the current self change, proxies may exercise
practical wisdom and creative judgment (Koppelman, 2002, p. 81) in
reconstructing the character of the past self in light of change. This is
surely another way of describing the Lynn/Dresser proposal of an informed
imaginary dialogue with a former self.
Continuities are also apparent at the bodily and emotional level. Hearing a
once-loved lullaby or hymn or feeling a caress will soothe or bring a smile to
the face of a senile adult. Emotional responses, though poorly understood,
may be informed by the past. As my mother said (with pleasure) of my
daughter-in-law: I dont know who that girl is, but I know I love her!
And continuity of the self is not borne by the individual alone; intimate
others carry the selves of their demented loved ones, as noted above. When we
bring my mother a box of ginger chocolates, she smiles and asks, Are they my
favorites? But this cooperative carrying of less competent selves is really only
an exaggerated and largely (though not entirely) unilateral form of what we
ordinarily do in constituting and being constituted by the memories, stories,
and loving acts of others. An old friend can recount a story in which I was a
player. The flavor of the story may resonate but the details quite escape me.
When this happens it is like a gift of me to myself. My old friends and my
intimate others carry my self, just as my family and I carry the self of my
mother. Hyperseparation between selves is reduced by the sharing of identityproperties, such as dependence, dignity and autonomy, between the competent
and the non-competent; by the manifestation of the character of the noncompetent through their episodic experiences; and by our generalised reliance
on each other for the constitution of our selves.
Are there moral limits to the extension of the self and the Lynn/Dresserstyle mediation of its autonomy? I believe so. As moments of resonance with
the former self fall away, and as intimate others are increasingly morally
shaped by other relationships, their moral authority as mediators of the former
self diminishes. This has less to do with the advancing dementia that eclipses
the former self than with the gradual weakening of the claim that intimate
Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007
448
others can represent the process and substance of the reasoning of a distant
self. Perhaps in these circumstances we might appeal to another suggestion
made in the Lynn/Dresser proposal, that:
[I]n practice, surrogate decision-making for incompetent patients often has
to draw on all three standards for decisions about an incompetent patients
care. This blending of different kinds of reasons and reasoning in particular
decisions by surrogates for incompetent patients recognises the priority of
the different forms of reasons and reasoning; at the same time, it remains
sensitive to the variability in the degree to which the different kinds of
reasons are available, or are determinative and decisive, in a particular
situation. (Lynn et al., 1999, p. 273)
Where an imaginary dialogue can no longer provide a legitimate mediation of
the autonomy of a former self, some such blended approach to proxy
decision-making, applied with Koppelmans practical wisdom and creative
judgment on a case-by-case basis, may be the best we can do.
VII. CONCLUSION
In this paper, I have explored the proposal by Lynn, Dresser and others that we
should sometimes view the deliverances of proxy decision-makers in cases of
dementia as vicarious exercises of agency by their formerly competent
intimate others. Through imaginative constructions of dialogues, sometimes
embedded in plausible narratives, the preferences of intimate others may be
updated, rendered responsive to current circumstances and wishes of family
members, and criticized by relevant ethical norms. The constraints on this
process that proxies must be trustworthy, free of emotional impediments,
capable of telling a coherent story, and willing to subject their stories to
political and other correctives elevate the imaginative dialogue from the
status of a just so story to something with prescriptive force. Because of the
ambiguity of our moral lives, competing narratives may be rendered.
Furthermore, because our moral license to act as mediators derives from the
constructive immediacy of our connection with the other, the license may run
out.
Both complications suggest desiderata for the exercise of vicarious
autonomy. One is that, where possible, a number of intimate voices should
be heard, and contrasting narratives compared. Another is that discussion of
Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007
449
the best interests of the current non-competent self should figure in the
imaginary dialogue, and gain ascendancy as dementia becomes profound.
And, importantly, none of this is to suggest that other moral considerations
(such as unbearable burdens of care falling on family members or extravagantly costly and futile medical measures being employed) should be
trumped by appeals to autonomy. Autonomy is only one morally relevant
feature. Finally, I have suggested that by questioning the dualistic construction
of selves and the valorizing of independence we can answer those who, like
Davis, regard selves with dementia as morally and personally too remote to
make justifiable demands on us. Instead we can say, We have seen our future
selves; and they are us!
NOTE
1. With the consent of my father (who is also proxy for my mother), I use two personal
examples in this paper to highlight the complexity of proxy decision-making by intimate
others. Although it is unusual to cite personal examples to make a philosophical point, I
appeal to Susan Rubins eloquent defence of arguing from ones own case in bioethics. In a
paper given at the Canadian Bioethics Society in Winnipeg in October of 2001, Rubin
observed that, while bioethics relies on the use of cases, we seldom use our own. She offered
rebuttals to three objections to using ones own case in bioethics: metaphysical, ethical, and
methodological. Against the metaphysical sceptics, who claim one lacks objectivity when
telling ones own story, she observes that (i) all experiences are mediated by interpretation
and require critical evaluation, the stories of others as much as our own, and (ii) transparency
is heightened when an author discloses how she got where she is. Against those who
challenge the ethics of self-disclosure, she argues that truth-telling and fairness are in fact
enhanced by citing ones own case, as ones standing and authority with respect to the topic
can more readily be assessed. She offers three ethical guidelines for self-disclosure: Is it
useful to the audience? Why are we disclosing? How appropriate is self-disclosure in the
context? Finally, she argues that, methodologically, using ones own case offers a rich
resource heretofore dismissed on inadequate grounds. And, pointedly, she observes that in
many professions (for instance, psychological counseling) it is considered good practice to
reveal ones personal experiences and evaluate them for bias.
REFERENCES
Baier, A. (1986). Trust and anti-trust. Ethics, 96, 231260.
Brody, H. (1994). The four principles and narrative ethics. In: R. Gillon (Ed.), Principles of
health care ethics (pp. 207215). Canada: John Wiley and Sons.
Davis, D.S. (1999). Rational suicide and predictive genetic testing. Journal of Clinical Ethics,
10, 316323.
Downloaded By: [EBSCOHost EJS Content Distribution] At: 01:49 20 July 2007
450